Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

Great post Biophile, thanks for posting. One thing I hope Alan gets out of this discussion is an understanding of the need for RESPONSIBLE members of the psychiatric profession to step forward with LOUD denunciations about how their profession has been hi-jacked regarding CFS.

The ignorance and arrogance of many arm chair psychiatrists interjecting themselves in CFS discussions is and has been astonishing. A question I would have for Alan is, "When will the psychiatric profession take this situation seriously, and address it appropriately and assertively?"

Regards, Wayne

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I'm going to do something a little unusual, and respond to my own post. I hope that's allowed.

I've noticed for many years that just about every profession, religion, organization, etc. has some sort of "fringe" element to it that is an embarrassment to others of that group. There are some very bad doctors; priests who sexually abuse innocent children; terrorists who kill in the name of their religion; politicians who do things that embarrasses others in their party, etc.

What I find difficult to understand is the extreme hesitancy of the more responsible members of any given group to "call out" those that are so way out of line. It seems there's an unspoken code in the medical field to not report incompetent doctors; church officials for years were more concerned about the church than abused children; Muslim moderates are generally timid about denouncing "islamic" terrorism for what it is, etc.

I have a certain understanding of this hesitancy, but I certainly can't condone it. To have members of an organization speak out against the unethical actions/words of others in the organization carries far more weight than when outsiders criticize from afar.

Which brings me to the psychiatric/psychological professions and their almost complete silence regarding the untenable situation of the vast majority of our population regarding CFS as a psychological illness. This didn’t happen by accident. It happened by way of methodical and persistent efforts made by people in some very powerful positions to influence this kind of perception.

These efforts have created an incredible amount of antagonism between ME/CFS patients and most other members of our society (national and global). The damage has been enormous, and yet no one in a prominent position seems to want to take the time to explore this phenomenon and take the initiative to speak out against it.

Where are the responsible voices in the psychiatric/psychological professions? Why won’t they speak out? This would be a GREAT time to do so; the scientific news coming out regarding the association between CFS and MLVs is compelling. At least a certain percentage of our population certainly must be beginning to rethink their perspectives on CFS.

I certainly believe that if responsible members of the psychiatric/psychological professions would chronicle and decry what has happened, it could do much to change perceptions, and perhaps lead to more funds for biomedical research. Alan, could you tell me why you think this has not yet happened?

What I find difficult to understand is the extreme hesitancy of the more responsible members of any given group to "call out" those that are so way out of line.

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We, as a society, have seen the need to intervene in the case of the police service and institute pretty tough regulatory guidelines, and independent complaint commissions with well funded and pro-active investigative arms. Nothing similar is in place for medicine and I think that is why so many CFS patients have so been badly treated.

We'd rather just have faith in doctors... maybe a reflection of our own fear of death and disease? We don't want to believe that those working within the health service are just as likely to be stupid and bigoted as those working within the police service. People used to have the same desire for trust with the police too, and it only led to trouble there too.

So what was this? Hit and run? I was hoping for a meaningful dialogue and I must confess that I am a bit taken aback by the fact that he does not take the time to respond to our posts. Some of them might have been a bit aggressive but the majority of posts were thoughtful and respectful. I certainly hope he can find some time to consider them.

We, as a society, have seen the need to intervene in the case of the police service and institute pretty tough regulatory guidelines, and independent complaint commissions with well funded and pro-active investigative arms. Nothing similar is in place for medicine and I think that is why so many CFS patients have so been badly treated.

We'd rather just have faith in doctors... maybe a reflection of our own fear of death and disease? We don't want to believe that those working within the health service are just as likely to be stupid and bigoted as those working within the police service. People used to have the same desire for trust with the police too, and it only led to trouble there too.

So what was this? Hit and run? I was hoping for a meaningful dialogue and I must confess that I am a bit taken aback by the fact that he does not take the time to respond to our posts. Some of them might have been a bit aggressive but the majority of posts were thoughtful and respectful. I certainly hope he can find some time to consider them.

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It's only fair to give him a bit more time to post a reply. If he feels he wants to make thought through replies to a lot of the comments posted, it could take a while.

To me, almost all of the psychosomatic research that surrounds CFS seems poorly thought through and based upon the flimsiest of evidence, or else is openly worthless. But maybe that's my ego attempting to protect me from the realisation of my own madness? It seems that many of those working on the psychological side of CFS, for all their self-professed sophistication in understanding the psycho-social factors the surround illness, seem deeply uninterested in the intense strain and hardship they cause by so casually questioning the sanity of an entire group of already widely maligned patients. If there was compelling evidence that we were mentally disturbed, then of course they should not hide this in order to save our blushes - but I do think that their bold speculations about a potentially psychological nature of CFS should wait until they have this evidence, not just because of the widespread stigmatisation and increased isolation their work can bring to CFS patients, but also because undermining ones ability to assume ones own (at least marginal) sanity is in itself a severe hardship.

You’ve spoken about the need for caution with regards to CFS and XMRV, but have you written about the need for caution amongst those who believe CFS should be treated as a psychosomatic/functional/hysterical/medically-unexplained(wink-wink)/malingering condition? Is this something which concerns you or your wife? What evidence do you think would be required before treating CFS as a psychological condition would be acceptable?

...I also really think that the way CFS has been handled by the vast majority of psychologists specialising in it is deeply immoral and unreasonable and would be interested to hear what you thought, and if you hold their work to the same standards as the bio-medical CFS work.

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(Bold emphasis mine - Sean)

My 2 cents?

Mr Dove, I have mixed feelings about your case. Sure, you have had to wear some unjustified criticism and harsh words, and that does not help anybody, and I am not excusing it.

But if you think us patients are unpleasant and irrational, you should see what we have to put up with, 24/7, for years & years & years on end (now over a quarter century for me), in public and in private, from ideologues, incompetents, insurance company apologists, and good old fashioned moralistic bullies, including those claiming to be rational, hard-nosed, science-based professionals only concerned for our 'welfare', blah blah blah, ha ha ha....

Walk a mile or two in our shoes and I am pretty sure that you will become a lot more understanding and tolerant of the deep anger and outrage that patients feel, especially towards the psych school ideologues, their superficial and selective use of evidence and very damaging (and illegitimate) double-bind 'reasoning', and their often quite nasty fan pack.

It would push the most generous, resilient and sane person alive to utter despair and the brink of irrational violence. If anything, I would suggest the fact that most patients don't literally take a baseball bat or machine gun to the world around them says a lot for just how rational and decent we have managed to remain under the most trying of circumstances.

You ever consider that possibility?

Yes, that anger and outrage is not always expressed or targeted in the most appropriate way. So we are merely human, we have our weaknesses, limits and breaking points...

Well, big freaking deal. I think you would be genuinely shocked and appalled at what we have to put up with, including the profound double standards we are subject to, and would quickly come to see that the real problem does not lie with our attitudes, personalities, and behaviours.

The ugly truth is that, broadly speaking, both medical science and the wider community have seriously failed us for a long time now. And that otherwise rational and decent folk like yourself have great difficulty in believing and accepting that. In one sense I don't blame you, the implications of all this are very confronting and difficult to handle, some of your most cherished beliefs about the technical and ethical integrity of the scientific process, the medical profession, and society, are under serious and legitimate challenge over this. But it remains the ugly truth, and it has to be dealt with at some point. On this both you, and most of the medical profession, have a lot of catching up to do with us patients. We have been dealing with it in our faces for decades.

Frankly, sir, any transgressions of ours are pretty minor compared to the mountain of profound injustice, insult and injury we have to continuously deal with from those claiming to be our intellectual and moral superiors, who sometimes quite self-righteously claim they are only trying to 'help us' and demand (sometimes quite forcefully) we take the 'medicine' they prescribe for our own damn good. It is the sort of pompous, patronising, paternalistic 'help' we could do without, thank you very much.

Time you took a step or two back from your legit but trivial personal grievance over our harsh and not always entirely rational or justified words, and started focussing your critical analysis on those who really deserve it. And it ain't us patients.